JenRose

Mandapanda im so sorry you are going through this and for your DS it must be very worrying. we went through this for 2 years with our DS,he totally refused to go to school for 2 years,we were threatened with court,told it was our parenting you name it,he was eventually dx,d with AS. is your son statemented, also you dont say what his diagnosis is? with regards to CAMHS well, erm hmm, we havent had a very good experience with them for either of our children,but i know there are parents who have. have you written to the LEA and asked for him to be assessed,we had to do this and it was refused but we got there in the end and he was statemented and is now in an independent special school and thriving. Dont give up hope,you are your sons best advocate,there are a few of us on here who have been through what you are and if i can help you in any way just shout!!! jen x

im so sorry you are going through this clarypuff. i dont know much about child in need meetings but didnt want your post to go unanswered jen xx

thats really good,well done you dooday for taking it all the way!!! this is what i dont understand, we had EXACTLY the same situation/scenario with DS, put in a complaint,asked for the video of the ADOS/notes hey presto he gets diagnosed. so why are they doing the same with DD? shes already had a CDC assessment which said triad of impairment there and shes been privately dx,d as well. its almost as if they are testing us,and this psych who we have complained about is fresh out of uni and only just qualified,shes very young and not experienced enough. the mind boggles!!!

ah didnt think of it like that. ive no wish to do a formal complaint,we just want her referring to an OT and to get confirmation that she is still being assessed for an ASD as we were led to believe,we do want an explanation though as to why they have ignored her sensory difficulties and focused on our parenting skills,but then i guess thats CAMHS for you!!!

thanks cmuir and js mum. i too dont have much faith in CAMHS not especially after they messed up DS,s dx 3 years ago, we got there in the end but only after much pressure from us and a refusal to attend a parenting course telling them that when they run a course for parents of children with an asd we would attend. i have drafted a letter asking for clarification of whether they have or are about to refer DD to an OT for help with her sensory difficulties and if she is still being assessed for an ASD as we have been led to believe. i dont understand why a senior psych is now involved, we have certainly never met her nor has she met DD. perhaps this psych we saw first (who is very young an hasnt been there long) needs someone to hold her hand. i have said that when we received clarification on these matters then we will be in a position to arrange a mutually convenient date/time to meet. cant beleive they are doing this to ANOTHER one of my children after all the mayhem last time. it really makes me want to

Heard back from CAMHS today re our complaint at the way our parenting skills were said to be causing our daughters reluctance to toilet train. DD has hemiparesis and a private dx of PDD-NOS, CAMHS are "supposedly" assessing her for an ASD. anyway they are "sorry" that we felt downhearted at our last appointment and due to the issues raised the psych has "invited" the Consultant psych to a meeting they would like us to attend. Definate case of ###### covering me thinks. now im not sure about attending this meeing because a, We have never met this consultant psych before,nor has she met DD and i presume shes the original psychs boss b, they will try and "spin" it that we misunderstood,communication error etc etc c, Nothing has been said about them referring DD to an OT or that they are still assessing DD for ASD. so im unsure of what to do really. just wondering if anyone has some advice for me. im sick of falling out with doctors and CAMHS and LEA,s over my children,thats all i ever seem to do-write complaint letters about lack of service/bad treatment etc and im starting to think its me with the problem.

Thanks karen. I would refer her to the NHS OT but i know from DS still being on the waiting list 12 months after being referred and also there is an 18 month wait!! i think we will have to get a private OT to come to our house and see DD. thanks for your advice it reminds me that im not a neurotic over anxious mother who has caused her child to not want to toilet train. Where do they dig these professionals up from???????

Re the private OT,ive had a look on the web but cant see anything,does anyone have a link to a site for private OT,s? Thanks jen

thanks for that info jsmum ill definately have a look at that. This is the confusing thing,DD is under the Consulatnt Psychiatrist who is asessing her to see if she has an ASD, she is very experienced and "eventually" gave DS his dx of PDD, she has referred DD to clinical psychology to see if they can help us with DDs toileting. This clinical psych is very very young,and i think only just qualified cos she wasnt there 2 years ago when we were at CAMHS for DS. I cannot believe she can simply disregard all the medical reports,CDC asessment and our private dx and what we are telling her. We have written a strong worded letter telling her we are NOT happy that she has disregarded what we are saying and we have asked to go through DD,s medical files at the next appointment,i know that wont go down well but i dont care. DD is quite bright so all the professionals are telling us and is able to mask her difficulties at school so the clinical psych has visited school they have said they dont see any socialising problems and shes now said its out parenting skills. We wont stand for that,we fought for DS and we will fight for DD to have the correct diagnosis,i just cant beleive we are having to go through it all again, if we dont get any joy from this psych then we shall ask to see the consultant psychiatrist again who is very experienced.

Thanks for the hug sooze. i dont think its her hemi thats stopping her from toileting,shes been on the toilet last week for a couple of days,we bribed her with a dora sticker chart and a new dvd,sh got her dvd and stopped,shes a clever one that one!!! we think its sensory difficulties,when shes been on the loo before we have to tuck her in with a cover/towel, she likes things being tucked around her and deep pressure. but the clinical psych wont refer her to an OT cos we "dont know" if she has sensory difficulties or not which does not make sense as surely an OT is the one who will dx it?

Hello, ive not posted on here for a while but have been lurking!!! We had a visit to CAMHS the other day regarding DD. Some of you may remember my DD who has a dx of PDD-NOS (private dx) after the CDC dx,d her with ASD and then changed their mind following a discussion with the Ed Psych. DD is still in nappies and is nearly 5, she has been seen by the Consultant Psychiatrist a number of times over the last year who felt that she was presenting with some symptoms of an ASD but that she was too "sociable" for a dx. SIGH. She said she wasnt saying definately no to an ASD but wanted us to have some help from a clnical psych with regards to her toileting difficulties. DD also has hemiparesis in her left side and is only daily medication for a sluggish bowel,she has been on this for 3 years now and understandable has not wanted to toilet train. The clinical psych went into school to observe her a couple of weeks ago and we were at CAMHS the other day. Basically she has said DD does NOT have the same difficulties as her brother who has AS and that shes a very bright lovely girl with lots of positive attributes and if we can just get her toileting difficulties sorted the future is looking good. She queried why we use visual timetables for her, we replied thats because she likes to know things in advance,she said yes but she is very socialble and we said her being very bright means she is able to mask her difficulties at school but that we get the meltdowns over trivial things such as a child looking at her a certain way,or she doesnt like a certain girls hair or because she is trying to get the other children to stop talking when the teacher is and they are ignoring her. Anyway her advice is to play with her more,to give her special time and let her direct the play,to which we replied we DO play a lot with her she isnt ignored at all,she said yes well i have to ask myself what she is getting from the attention over her toileting difficulties. we were understandably not impressed and we have written a letter to her saying how disappointed we are that after all the assessments DD has had and that the jury is still out from the Head of CAMHS as to whether she has an ASD or not she can just blame it on us not giving her enough attention. feeling a bit downhearted really,although i know its a load of codswollop because after everything we went through with DS who spent 2 years out of school and us fighting 3 tribunals and CAMHS to dx him (which they did in the end) they are again treating us this way. Sorry for the long message just needed to offload and i know people on here understand,feeling a bit about it. thanks for reading x

oh and the dx of hemi is wrong as well apparantly cos "she can walk and climb you know"

last week R,s school informed us that her nursery hadnt been in touch to tell them about her. a meeting has now hastily been arranged for this friday. R,s SEN are hemiplegia,bowel and bladder incontinence,and currently undergoing assessment for ASD with CAMHS. Nursery do not accept that she displays any symptoms of an ASD neither does their Ed Psych, we lost the tribunal in May where we were hoping to get her some support for school. so the SENCO is going and maybe the head of the nursery and i just know they are going to contradict everything that we say about R, and i will have to keep my cool. but i want to get my point across about R and her difficulties, i was thinking of making a book for them in september of her likes and dislikes etc,but ill probably be made out to be an over anxious parent. god its so hard this, the nursery are like the cat that got the cream since we lost the tribunal, i have purposely not been going to pick her up or drop her off thus avoiding the senco who delights in picking at the slightest thing to cause disagreements. has anyone got any tips for me on friday. thanks

thanks flora we did at first ignore her and the fly but her screams got louder and louder and the ignoring wasnt working, but i will try it again if thats what worked for you. thanks jen x

DD has a phobia of flys which seems to be getting worse,she screams the place down when she sees one, outside or inside, there was one on the outside of the car window the other day and she screamed so much we had to pull over and i had to get it off the window. today there was one in the house, DH got the spray out but couldnt catch it!!!! she screamed and screamed, eventually we calmed her down by wrapping her up in a large towel with her hands and arms/legs underneath and lying next to me, but then she wouldnt take her arms out of the towel to eat her dinner and i had to give it to her like a baby. CAMHS consultant is coming in 3 weeks to see her but in the meantime i was wondering if anyone has any suggestions on what we can do, i cant wrap her up in a towel for hours on end each day!!!! TIA